This month we share a primary caregiver’s unique perspective on the harder aspects of caring for a loved one at home. We believe that family caregivers represent about 70% of the national caregiving population. Caregivers are usually spouses and adult sons and daughters. The spouses themselves tend to be aging and facing their own health issues. The adult children are usually still working, juggling family needs and the needs of their frail mother or father, or both. Stress is the common currency of families finding themselves providing care for a loved one over a long period of time. Support is needed desperately as this is one of the most difficult jobs a family can take on.
There are so many, many things to keep in mind when caring for a fragile elder at home: the multiple chronic illnesses; the medications; the doctor’s visits; the constant monitoring of blood sugars and blood pressures; the 24/7 need to remain alert and vigilant about all aspects of care. Last to be considered is usually the family caregiver’s feelings and health status, however statistics couldn’t be clearer; primary caregivers are often first casualties in a protected caregiving situation.
Caring for the caregiver is clearly one of the most critical yet neglected parts of any long term care equation. This is ever more true when the elder is your spouse. As they say … “it’s complicated.”
Our writer this month is a family caregiver and also someone who has become a friend. I have come to admire her courage in admitting some of her darker feelings about her stress and what her husband’s disability means to her own life. She has struggled with her feelings and learned to bring all of them to the table to find her way through. She seeks by means of honesty and relationships to transcend the things that block her from being the person she wants to be. She brings humor to her frustrations and clarity to things most people aren’t brave enough to verbalize.
With this article she is reaching out to others who are taking this journey with a loved one. I hope you’ll find her words comforting, illuminating and that they will strengthen you to seek the support you need. Taking care of yourself will enable you to better care for those you love.
“My spouse has Dementia with Lewy Bodies. It’s taken seven years to get that diagnosis – seven years, umpteen different doctors and innumerable medical tests. Did I mention the hours on the Internet doing research? Even this name they put to it is a guess – there are no diagnostic tests for the disease; it’s been a process of elimination.
The disease has progressed enough that he requires pretty constant caregiving; he walks with a walker and cannot drive. We have caregiving help 48 hours a week which is a tremendous help. Even with their help I’m left with all the responsibilities and decisions of our life – finances, insurance, cooking, cleaning, shopping…the list seems endless. With that load I have a myriad of emotions- fear, worry, resentment, and irritation, to name a few. And with those emotions come my own judgments about the emotions – the self-blame because I’m not handling things with the kind of grace, patience and unconditional love I expected of myself. And then I have many of the physical symptoms that manifest with that kind of stress and worry – sleeplessness, depression, rashes, etc. The possibilities are endless.
In order to cope with the responsibilities, I found myself giving up things that I enjoy and then resenting the fact that I gave them up. Then there’s the advice – all of it heartfelt, well-meaning, true, and overwhelming: “you need to take care of yourself. You can’t expect to be able to take care of anyone else if you don’t take care of yourself.” Everyone seems to know a story about a caregiver who got seriously ill and died before their spouse. I know they’re right, but it adds to the pressure. I don’t see any way out and then I am ashamed because part of me WANTS a way out.
I sometimes fly off the handle at some comment or request. Then I feel guilty and wrong because of my reaction and I blame myself for not being able to handle all this 24/7/52/365. It’s overwhelming and there’s no end or reprieve in sight and I judge myself because while I love my husband, I badly want that reprieve.
I have to make lots of decisions – decisions that are not black and white, decisions that will affect both our futures. What’s best for him? What if what’s best for him is not what he wants? What about what’s best for me? Shouldn’t I be considered in all this? He sometimes feels mistreated, victimized, and hurt because of the way he’s treated or a decision I’ve made.
What my husband is going through is an evolution. I’m finally starting to accept the fact that I’m going through my own evolution and it’s very tough – one of those famous ‘growth opportunities’. I’m not good at taking care of myself and I seem to be resistant to learning. Taking care of others seems to come naturally. Taking care of me turns out to be something that I must learn and I seem to be a resistant student.”
If you or a loved one is currently a family caregiver in need of support, our writer has so generously started a private email where she can be reached to further share experiences and help encourage one another. Please reach out to firstname.lastname@example.org. You are not alone.